Embed Size (px)
Citation preview
Oncology Nursing in Cancer
Survivorship Care
Nora Gant, MN, ARNP
Oncology Survivorship Clinic
Providence Regional Cancer System
Southwest WA (Olympia)
Puget Sound Oncology Nursing
Society:
Fundamentals of
Oncology Nursing
March 2016
Objectives
Describe cancer survivorship definitions and
prevalence.
Discuss the unique health risks and needs of cancer
survivors.
Discuss Survivorship Clinics/Programs and
Survivorship Care Plans and Treatment Summaries
Awareness of possible issues addressed at a
Survivorship visit
Describe the role of oncology nurses in survivorship
care.
Cancer Survivorship: Changing Times
Cancer has now become a curable disease for
some and a chronic illness for others.
Patients with terminal disease are also “survivors.”
Patient needs beyond surgery, chemo, radiation.
Increasing survival poses opportunities for patients,
family members, and the health care team.
Emerging role for health professionals (e.g.,
oncology nurses, primary care, psychosocial
support, Survivorship clinics/programs, etc.)
Cancer Survivorship
Who is a Cancer Survivor?
Anyone who has been diagnosed with cancer from the time of cancer diagnosis, through the balance of his or her life. Includes those dying from untreatable cancer.
Family members, friends, and caregivers are also impacted by the survivorship experience.
How many survivors are
there?
Nearly 14.5 million cancer survivors in the United States
Does not include in situ of any site except the urinary bladder, and does not include basal cell and squamous cell skin cancers.
Predicted nearly 20 million by 2020
64% were diagnosed 5 or more years ago
15% were diagnosed 20 or more years ago
1 in 2 men and 1 in 3 women will be diagnosed with cancer in their lifetime
Estimated Number of Cancer Survivors
in the United States From 1975 to 2012
Estimated Number of Persons Alive in the U.S.
Diagnosed with Cancer
on January 1, 2012 by Site (N = 11.9 M)
Why is the number of people alive
after diagnosis increasing?
Earlier diagnosis through screening
More effective treatment
Aging population
Prevention of secondary disease and
disease recurrence
Decreases in mortality from other causes
Problems with Five-year Survival
Rates
A valid measure in a randomized trial of cancer
therapy, yet often misused.
Cancer testing has a powerful effect on 5-year
survival rates.
Every year we find cancer earlier, so expect that
the 5-year rates will increase over time.
Also, surviving for 5 years DOES NOT mean
you are cured (e.g., breast cancer).
Be cautious in interpreting!
History of Survivorship Activities:
Private & Government Sponsored
1986 - National Coalition for Cancer Survivorship
(NCCS)
1988 – ACS: 1st Survivor’s Bill of Rights
1990 – National Breast Cancer Coalition
1997 – Office of Cancer Survivorship at NCI
1997 – Lance Armstrong Foundation
2004 – ASCO Survivorship Task Force
2006 – IOM Report on survivorship care
2007 – IOM Report on care for whole patient
2015 – COC: Survivorship component
required
Survivorship Services: Is There a
Need?
Livestrong Study (2004): 50% of cancer survivors felt their secondary needs were unmet. (n = 1024)
Chronic pain
Depression/Anxiety
Fear of Recurrence
Long-term physical and psychological effects of cancer and treatment
Infertility
Sexual Dysfunction
Relationship Difficulties
Financial Problems/Job Insecurity
Survivorship Services: Is There a
Need?
Livestrong Study Conclusions (2006)
Cancer survivors’ post-treatment concerns should be addressed and understood more fully.
Health care providers should engage with their patients to understand the multifaceted nature of survivorship.
More research to understand the survivorship experience.
“The highest level of distress occurs at
transition points in treatment: at the
time of diagnosis, awaiting treatment,
during and on completion of
treatment.”
IOM Report (2006)
Transition Points Distress
End of Active Treatment:
Unexpected Stress
Feeling of abandonment.
Continued symptoms (e.g., pain, fatigue, anxiety).
Active treatment over fear of cancer resurgence.
Reluctance to transition back to a primary care
provider.
Many providers are unaware of long-term physical
and psychological issues associated with cancer
and its treatment.
Quality of Life Issues
Medical Problems: Cardiovascular disease and
cardiac failure
Fatigue
Osteoporosis / osteopenia
Hypothyroidism
Premature menopause
Pulmonary function
Lymphedema
Urinary incontinence
Infertility
Neurologic problems (balance,
neuropathy, memory)
GI (bowels, bloating, acid
reflux)
Dental impairments
Increased risk of 2nd cancers
Symptoms and
Functions:
Restricted social and physical
activities
Memory loss (“chemo brain”)
Muscle and joint stiffness,
weakness, cramps or pain
Sexual dysfunction
Fatigue / lack of stamina
Distress and worry
and more…
Late Effects vs Long Term Effects
Late Effects are toxicities of treatment that are absent or subclinical at the end of therapy but manifest months or years later.
Injury to organs or failure to compensate (e.g., pulmonary fibrosis)
Non-medical (e.g., employment discrimination).
Quality of Life Issues (e.g., sexual dysfunction)
Late Effects vs Long Term Effects
Long Term Effects are chronic or persistent effects that appear during treatment and continue beyond the end of treatment.
Cancer related fatigue
Peripheral neuropathy
Sexual Dysfunction
After a cancer diagnosis . . .
“Cancer may (or may not) leave your body,
but it never leaves your life. It impacts
mind, body and spirit. It is a family
disease, even when familial genetics do not
play a role; once you are diagnosed, it
impacts all.” -Therese Billings, “Seven Time Cancer Survivor”
You may be “cancer-free” but not free of
cancer!
Psychosocial Effects
Cancer patients vs. others with serious illness
Triple the risk of depression within 2 years of diagnosis
Significant minority of cancer survivors will meet criteria for a mental disorder
BUT majority will experience psychosocial distress at a significant level
Who can best identify and assess psychosocial distress?
History and comfort level
Timing – Distress may not manifest until AFTER treatment ends
Manager of other services and resources
22
Psychosocial Distress Risk Factors
History of mental health issues
High number of stressful life events
Substance Abuse
Strained or very limited social support
Younger age
Decreased physical and/or cognitive functioning as a result of treatment
23
Psychosocial Effects: Distress
“Distress” is less stigmatizing term
Distress is the 6th vital sign
Assessing distress: Use evidence-based instruments:
NCCN Distress Thermometer http://www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf
At minimum, can just ask 1-2 questions (PHQ 1 or 2)
Please do not just prescribe meds
Psychosocial Care increases emotional well being AND can decrease disease symptoms &treatment-related adverse effects (e.g., fatigue, pain).
24
Barriers to Distress Assessment
For Provider
“Uncomfortable” conversation
Daunting
Lack of time
Lack of confidence
No resources
Reluctance to stigmatize patients
For Patient
Just need to “bite the bullet”
Embarrassed
Lack of trust in clinician
25
IOM 2005:
27
From Cancer Patient to Cancer Survivor: Lost in Transition
Barriers facing patients & providers
Fragmented, poorly coordinated cancer care
system
Absence of a locus of responsibility for
follow-up care
Poor mechanisms for communication
Lack of guidance on what constitutes quality
survivorship care
From Cancer Patient to Cancer Survivor: Lost in Transition
(2005 IOM Report)
28
From Cancer Patient to Cancer Survivor: Lost in Transition
(2005 IOM Report)
Survivorship Needs
Prevention, surveillance and detection of new and recurrent cancers.
Prevention, surveillance and detection for consequences of cancer and its treatment.
Coordination between specialists and primary care providers to ensure that survivor health needs are met.
Every survivor should receive a treatment summary and care plan at the end of treatment.
29
Survivorship Care Plan and Treatment
Summary
Gaps in communication between health-care
providers are a major impediment to necessary
coordination of care after treatment.
IOM recommends 2 reports after treatment:
A treatment summary
A survivorship care plan
Upon completion of Active Treatment (surgery,
chemotherapy, radiation therapy). Ongoing
endocrine therapy okay.
30
What does a Care Plan and
Treatment Summary include?
Diagnosis: Cancer type, stage, histology, date and
age at diagnosis
Treatment facility and oncology health care providers and PCP with contact information
Treatment details: Chemotherapy, with selected cumulative doses, radiotherapy fields, surgical procedures, blood product exposures
Complications on/off treatment with long-term implications
Associated potential risks of treatment including second malignancy or specific organ toxicity with screening and follow-up recommendations send to survivor and healthcare providers
31
Risk of Comorbid Conditions
The major threat to life for many cancer
survivors.
Survivorship associated with increased
likelihood of not receiving recommended care
across a broad range of chronic medical
conditions.
Having both primary care physicians and
oncologists involved in follow-up appeared to
ameliorate this effect significantly.
32
Case Study
50yo female recently dx Invasive Ductal Carcinoma
of left breast (Stage 2: pT2 pN0 cM0), ER+, PR+,
H2N-.
Lumpectomy, chemotherapy with dose dense AC
and weekly Taxol, radiation therapy all complete.
Started anastrozole (AI), plans 5 years of endocrine
therapy.
Case Study (continued)
Distress screening: feelings of worry about
recurrence, difficulty with partner, hot flashes,
vaginal dryness, decreased libido, peripheral
neuropathy.
Discuss long term/late effects: common, uncommon,
rare (including secondary cancers). DEXA screening
for bone density, consider lipid screening and
counseling prn.
Case Study (continued)
Referrals to Onc Rehab (pelvic floor PT, OT for
peripheral neuropathy); acupuncture for hot flashes,
neuropathy; Discuss lubricants, vaginal hormonal
creams (try to avoid in breast cancer pts); Genetic
counseling depending on family history.
Survivorship Clinics
Patients meet with member of treatment team
and review Care Plan and Treatment
Summary, then have copies for future
reference and to share with providers.
Discuss treatment received, current condition,
and what to expect and watch for in the future.
Bridge back to PCP care.
Refer for specialty follow up (e.g., PT/OT,
Genetic counseling, mental health/support…)
Survivorship Clinics
Often ARNP-led
May be stand alone visit (60-90 minutes). May
have shorter follow up visits. May have annual
follow up or follow up as needed.
Covered by insurance as MedOnc visit
(including Medicare/Medicaid)
Challenges to Survivorship Clinics
Reimbursement versus Time: creating Care
Plans is very time consuming.
Referrals: a challenge for most Survivorship
programs, at least initially
Patient and Physician Expectations
for Survivorship Care
PCP only care: Fewer screening tests for cancer
Oncologist only care: Suboptimal noncancer-related care
Confusion between oncologists and PCPs about who is responsible for what: Both felt they should be responsible for primary cancer follow-up
Combining strengths of cancer specialty and primary care is the best option
Cheung et al. (2009)
Primary Care Efficacy:
Cancer Survivors
No differences in recurrent disease, deaths, serious clinical events or health-related QOL for breast cancer survivors whether receiving care from oncology specialists or primary care physicians.
Most PCPs indicate interest in caring for survivors, yet felt transfer of care from oncologist was poor; felt inadequately informed about the treatment course and appropriate surveillance guidelines.
PCPs need more specific guidance regarding surveillance for cancer recurrence.
Childhood Cancer Survivors
5-year childhood cancer survival rates combined
increased from 58.1 percent in 1975–77 to 82.5
percent in 2001–2007.
Due to significant advances in treatment, resulting
in cure or long-term remission for many.
As many as two-thirds of childhood survivors may
develop a late effect.
By age 40, the cumulative actuarial risk for breast
cancer is 35% for women who are survivors of
childhood Hodgkin’s disease who were treated with
mantle or chest radiation.
From Cancer Patient to Cancer Survivor:
Lost in Transition (2006 IOM Report)
Role of oncology nurses in survivorship
Nurse-led model of cancer follow-up promising
Nurses central to any interdisciplinary effort
In some instances, nurses may be best
providers
Barriers to adopting nurse-led models
Shortage of trained oncology nurses,
especially in outpatient settings
Potential preference of some patients to see
physician
The Role of Nurses
Nurses make significant contributions to
improving survivorship care, not only
through direct patient care, but also
through ongoing professional
development and certification,
programs, publications, and research.
Meeting the needs of the growing
survivor population will likely require
more nurses with advanced training in
oncology. Grant & Economou (2008)
In Summary . . .
Number of cancer survivors is growing
Survivor definition is broad
Survivor needs can be significant
Oncology nurses play a critical role
Survivor Care Plans needed
100% of patients need symptom
management.
Only some need chemo.
Life isn’t about waiting for the storm to pass . . .
It’s about learning to dance in the rain.
Care Models
Multiple models proposed dependent on multiple factors
Models include
Academic/Oncology Based Care
Disease-based, treatment-based or comprehensive community-based care
Family practice/Internal medicine-based
Shared Care between oncology and primary care
With or without transition
Harmony Hill Retreat Center
Located in Union, WA on the Hood Canal
Free three-day retreats for anyone ever
diagnosed with cancer & a companion. Also
family retreats and grief/loss retreats.
Beautiful, informative, supportive, restorative &
delicious!
www.harmonyhill.org
360-898-2363
Questions?
Nora Gant, MN, ARNP
Oncology Survivorship Clinic
Providence Regional Cancer System
Olympia, WA
360-493-4504
